Re: Question regarding Neurosarcoidosis

[Guest guest]

Sounds like some of my symptoms. In my case they'd frequently go away popping up again

somewhere else.

Darrin

To: Neurosarcoidosis From: dvoegele@...Date: Mon, 7 Jun 2010 00:01:10 +0000Subject: Question regarding Neurosarcoidosis

Hi all,I was dx in 2006 with pulmonary Sarc given no medication and even when I complained about being short of breath I was told that it was all in my head. And I believed him.Recently I found an awesome pulmonologist who has put me on a regimine that treats me for breathing, gerds and allergies and I was finally cough free but still crazy short of breath on assertion. Not normal he says so off to have an trans-echo on Wednesday.While all this was happening I woke up two weeks ago with low pain and nothing that I could point my finger at to trigger it. It moved down my buttoks to both legs, then to my) sciatic nerve on my right leg and doc gave me pred. tapper and it started to feel better but the pain to my leg all the way to my toes was a 10. Now I have foot drop (slight) but enough to make my right foot slap the ground when I walk and the inability to lift my leg up very far.What are sign the neurosarcoidosis? Additionally I do get leg cramps..but not every night

[Guest guest]

Hi Dianna, I'm sorry you have to deal with the Sarc monster, but you've found the right place. if you scroll down to message archives and links, you can find a ton of information.

Did you get an injection in your rear lately?  I ask because it almost sounds like the sciatic nerve was damaged, with the pain you described and the foot drop?  However Sarc can do anything, and different things to everyone.

I do have the pain that shoots down my legs, mostly left, and deep pain that is hard to tell just where it is coming from.  I ask my husband to rub it, and  then he can't find the right place, I believe that is because it is deep pain, which can be nerve pain.

I have trouble walking, and lifting my legs, use to be just my left, but now both.  I can only walk so far and then I can't walk, but the foot drop I do not have and have not really heard of that related to Sarc, doesn't mean it's not, maybe someone else has that and will share that with us.   What medications are you on? 

Short of breath, that was the symptom that finally made the doctor realize my Sarc was active, could only walk a few steps before my O2 Sat dropped into the 80s and 70s.    We are here to help you, and like I said check out the links below.

Welcome I hope you find the answers you are looking for. However, we are all sick, so if you don't hear too much right away, be patient with us, we are here:) Blessings,Marla

 

Hi all,

I was dx in 2006 with pulmonary Sarc given no medication and even when I complained about being short of breath I was told that it was all in my head. And I believed him.

Recently I found an awesome pulmonologist who has put me on a regimine that treats me for breathing, gerds and allergies and I was finally cough free but still crazy short of breath on assertion. Not normal he says so off to have an trans-echo on Wednesday.

While all this was happening I woke up two weeks ago with low pain and nothing that I could point my finger at to trigger it. It moved down my buttoks to both legs, then to my) sciatic nerve on my right leg and doc gave me pred. tapper and it started to feel better but the pain to my leg all the way to my toes was a 10.

Now I have foot drop (slight) but enough to make my right foot slap the ground when I walk and the inability to lift my leg up very far.

What are sign the neurosarcoidosis? Additionally I do get leg cramps..but not every night

[Guest guest]

I have it in my lungs for sure. Recently developed severe pain to the sciatic about a 10 all the way to my foot. Then leg cramps put on a red taper and now foot drop I get a lot of left eye twitching and shooting pain occ through my body that I just blew offSent via BlackBerry by AT&TDate: Mon, 07 Jun 2010 11:33:35 -0600To: <Neurosarcoidosis >Subject: Re: Question regarding Neurosarcoidosis Hi Dianna, I'm sorry you have to deal with the Sarc monster, but you've found the right place. if you scroll down to message archives and links, you can find a ton of information. Did you get an injection in your rear lately?  I ask because it almost sounds like the sciatic nerve was damaged, with the pain you described and the foot drop?  However Sarc can do anything, and different things to everyone. I do have the pain that shoots down my legs, mostly left, and deep pain that is hard to tell just where it is coming from.  I ask my husband to rub it, and  then he can't find the right place, I believe that is because it is deep pain, which can be nerve pain. I have trouble walking, and lifting my legs, use to be just my left, but now both.  I can only walk so far and then I can't walk, but the foot drop I do not have and have not really heard of that related to Sarc, doesn't mean it's not, maybe someone else has that and will share that with us.   What medications are you on?  Short of breath, that was the symptom that finally made the doctor realize my Sarc was active, could only walk a few steps before my O2 Sat dropped into the 80s and 70s.    We are here to help you, and like I said check out the links below. Welcome I hope you find the answers you are looking for. However, we are all sick, so if you don't hear too much right away, be patient with us, we are here:) Blessings,Marla On Sun, Jun 6, 2010 at 6:01 PM, Dianna V <dvoegele (AT) verizon (DOT) net> wrote: Hi all,I was dx in 2006 with pulmonary Sarc given no medication and even when I complained about being short of breath I was told that it was all in my head. And I believed him.Recently I found an awesome pulmonologist who has put me on a regimine that treats me for breathing, gerds and allergies and I was finally cough free but still crazy short of breath on assertion. Not normal he says so off to have an trans-echo on Wednesday.While all this was happening I woke up two weeks ago with low pain and nothing that I could point my finger at to trigger it. It moved down my buttoks to both legs, then to my) sciatic nerve on my right leg and doc gave me pred. tapper and it started to feel better but the pain to my leg all the way to my toes was a 10. Now I have foot drop (slight) but enough to make my right foot slap the ground when I walk and the inability to lift my leg up very far.What are sign the neurosarcoidosis? Additionally I do get leg cramps..but not every night